It’s 7am and I’ve been awake for a couple hours now. Another night shift on PICU at the Birmingham Children’s Hospital and for the most part its been a good night. Joshua was prescribed Ranitidine to compliment the Omeprozole he’s already on for his reflux and (say it quietly now) he’s had a very peaceful nights sleep. No desats, no apneas, just several hours of wonderful sleep with a nappy change in the middle somewhere. My only complaint about the night… The hospital WiFi is down! WTF!! Isn’t WiFi a basic human right these days?!?! Without the WiFi I’ve had to entertain myself (easy) while Joshua sleeps, which means talking to his nurse (poor woman), trying to sleep on a reclining chair and trying to blog on my phone. They better get it fixed later on today, there’s football on at lunchtime.

The past few days have seen a few desats and one possible seizure. The doctor caught it and ordered an EEG which as usual showed nothing strange. We’ve also been complaining about the consistency from the doctors. Being complex Joshua is under a few different teams but it seems either they don’t talk to each other or no one is talking the lead. Everyday we get a doctor come in and tell us he’s ordering more tests and going to wean him off the ventilator. Then we tell him that we’ve been told by his neurology doctors that he’s not to be taken off the ventilator until the latest genetic tests are back. At which point the doctor gets frustrated with us because we don’t want to push Joshua then walks off to read his notes and talk to the neuro team. Later in the day we’ll get word from the nursing team or some other doctor that we should leave things as they are and wait for the genetic test results (however long they’ll be).

What really worries me is that some of these tests might be needed later on, so why not crack on and get them done while we’re sitting around for several weeks waiting for the genetic test results?

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